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newly diagnosed

apollo
Posts: 2
Joined: Apr 2002

Hi. I am so happy I have found this site and can read the experiences others have had. I was diagnosed with HD during the first week of March. I have a mediastinal mass that they say is pretty big. I was diagnosed stage IIb. I had drenching night sweats for about 2 months before being diagnosed. I visited my ob thinking I was menopausal, eventhough I'm only 32, but he found no connection. I was also having some chest pain, but I didn't connect this to the night sweats. After having a chest cold I finally had a chest xray which showed the mass. I actually felt relieved to know what it was. I'm currently in my 2nd month of ABVD chemo -expected to have at least 6 months, then some radiation. I have been battling low wbc counts and tried to take neupogen but had a terrible reaction to it. Less than an hour after my first injection I had dizziness and terrible stomach cramps. Has anyone else experienced this? Are there any other options besides neupogen?
Even after only three chemo treatments, I feel much better. I have no chest pain and much less tightness in my chest. I practice visualization and believe the mass is shrinking, but I didn't feel it growing so I am almost affraid to believe that I can actually feel it shrinking. Has anyone else had similar feelings?

lagniappe
Posts: 2
Joined: Apr 2002

Hey Apollo. I am a recent survivor of mediastinal hodgkin's, although I was hit with stage IVb. It's pretty scary how it sneaks up on you. I had no symptoms until two weeks before diagnosis. Having dealt with a big mass in my chest, I have to agree that the pressure on the lungs and heart is difficult, and that the instigation of chemo helps a great deal. The reason for this is that you are likely on prednisone, which immediately shrinks inflammation. I had no problems with the neupo. It was a godsend. Let me give you my experience with feelings in your chest. You will notice everything that goes on in there, but don't worry too much about interpreting them. It is very easy to think too much about heartburn. I am 8 months out of treatment, and it would be very easy to overinterpret every chest pain I have. The best thing you can do is just become comfortable with your situation in whatever way you can, and focus on enjoying your life. I told myself that I was going to exercise every day and focus on finding some joy in every day. I'm not sure if it worked, but it certainly made life worth living. I am 27, and male. I was treated with Stanford V, a short but brutal protocal. My thoughts are with you.

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

Stage IIB, night sweats, thought there was a menopausal connection despite being too young, chest pressure, chronic cough, mediastinal mass, ABVD...same, same, same!

The neupogen made me a little dizzy but no stomach cramps (have you asked your oncologist for options?). It was the thing that keep me on track for my chemo treatments though, never having to delay any of them.

Welcome to the worry club! I think we can learn to manage it, but that it becomes part of the package deal for the rest of our lives (it means that we are still lucky enough to be ALIVE though). I found that while I was undergoing some type of treatment, I felt I was doing something; but once the treatments were complete is when I felt most afraid that I had no control over whether it came back or not.

lmpg
Posts: 8
Joined: May 2002

Hi....
I was diagnosed in Nov. 2001 at age 37 with stage IIa Hodgkins. Hit me by surprise... like you, went to doc for one thing, found out I had another.

I started having chest pains which I attributed to getting hurt while messing around with the kids. I blew it off but when it didn't go away, I just new something was wrong. Then I got this lump as if the mass was pushing the breastbone up. I felt the chest tightness like you, etc. but thought it was from allergies as usual.

I did 12 rounds of ABVD, that crappy neupogen (didn't have cramps or dizziness, but was extremely uncomfortable, achy and miserable.) I was more miserable from the neupogen than I was from the chemo! I wasn't sick once in any way with the chemo! Those low wbc got me, but I was determined to get em up and survive this. I have a 7 year old and no way was anyone else going to raise him. Neither he or my future grandchildren were going to live without me.

I tell everyone that in all the crazy fun things I've ever done, I've never "danced on a table" at a party. I tell them that when I'm 100, and I will live to be 100, I will get out of my wheelchair if I'm in one, and dance on the tables at my 100th birthday party! Hey - you gotta set goals, right? :-)

Anyway, from treatment one, I felt 1,000% better! It was amazing. I actually felt relief that very day! Now with being done with the chemo and radiation, I worry about it growing back since I didn't feel it sneaking up on me in the beginning. I wish I had xray glasses to look at what's going on inside of me. I worry about every little twitch, pain, ache in "that spot" even though I know I'm doing everything possible to be healthy.

For 10 months I felt as if I was doing something about it while going through treatments, taking my vitamins, eating well, exercising, etc. Now, I'm still doing the vitamins, great diet and exercising, but because I'm not at the doctor every day/week, I feel as if something is missing and that it's not being "monitored" as much any more, even though I know deep down I don't have anything to worry about or that I should worry about anything. I don't know about others, but I feel as though I'm suffering from a "separation anxiety" of sorts from my docs, nurses, etc. They become your right hand, your guardian angels, and you depend upon them so much. Now it feels as if those new "family" members have moved on, or perhaps I should say that it was time for me to leave that cozy medical nest.

This weighs so heavily on the mind and the entire physical and spiritual being, doesn't it? Everyone who has been there with this disease says it gets easier with time, you worry less and soon enough life goes on better than before. I just hope so.

I did have feelings like you expressed. I felt it going away. I was always "in tune" with my body now even more so.

Good luck to you! Keep in touch.

runr
Posts: 15
Joined: Apr 2003

I am just finishing up radiation for stage 3b Hodgkins. I have 2 weeks of radiation left. I was 38 when I was daignosed. I was also having night sweats and attributed it to early menopuase. My mass was in my chest also. I did the imagery thing about imaging the mass shrinking. I was on nuepogen shots for a while but then went to Nuelasta shots. This is a one time shot you take after each chemo treatment. I did experience bone pain with it though.
I am a runner and experienced pain in my chest and a hard time breathing. After the mass shrunk I noticed a big difference. I still have a mass in my chest that is being radiated but the doctors believe is benign. I still have pain from it but am told it may be because the mass is pressing on a nerve. They hope to shrink the mass with the radiation to alleviate that. Hang in there and keep imagining the mass shrinking and stay postive!

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